Innovative Program Aids Chronically Ill Students in Baltimore

Baltimore--It is a surprisingly cold day for late March, the kind of
day that causes problems for 14-year-old Theresa Torrence, who suffers
from juvenile rheumatoid arthritis.

So today, Theresa will stay home from West Baltimore Middle School,
as she frequently does on the cold, rainy, or damp days that make her
condition worse.

But school will go on for Theresa. A special teacher will go to her
house in the afternoon with the assignments Theresa has missed and help
her. She will be marked "present" in school, and once the weather warms
up and she returns to West Baltimore Middle, she will have caught up
with her classmates.

Theresa is one of about 500 children in the Baltimore school
district who are benefiting from a special program offered by the
city's public-school system to address the special educational needs of
chronically ill children whose medical problems keep them out of school
intermittently.

The Chronic Health Impaired Program, known as chip, was the first
such program in the country developed by a public-school system to
address the special needs of this population, according to Baltimore
school officials. The program, started in 1974 with a federal grant to
help sickle-cell anemia patients keep up with their schoolwork, was
expanded the next year to include children with any chronic health
problem.

Chronic, Not Long, Illness

The program is not intended for children who will be out of school
for long periods of time--those children participate in a formal
home-instruction program. It is for those whose chronic health problems
bring unpredictable and intermittent absences of a few days at a time,
according to Sylvia Matthews, the program's coordinator. Ms. Matthews
noted that between 20 and 25 pupils each year develop prolonged
problems that necessitate their joining the home-instruction
program.

The students in chip, however, are usually absent between 30 and 60
days over the course of a year, Ms. Matthews said. The average cost of
the program per pupil during the 1982-83 school year was $364. Each of
the 11 full-time and four part-time teachers works with about four
students daily; because of time constraints, they are unable to work
with more than five each day. The teachers, who are certified in a
variety of areas but who are essentially generalists, spend about one
hour with each student.

Today, the 10-year-old program is still one of the few of its kind
in the country--and one of the best, according to a new four-year study
of chronically ill children in America by Vanderbilt University's
Institute for Public Policy Studies.

"The chip program came out as a shining example," said May W.
Shayne, research associate and liaison officer for the Vanderbilt
project, which is summarized in a two-volume report that is to be
published this year. "Unfortunately, there are really few school
systems that have attended to the special needs of these families."

Despite its success, chip found itself threatened with deep budget
cuts last year by the financially strapped Baltimore school board. In
its proposed budget for the 1983-84 school year, the board suggested
cutting the budget for the schools' entire Home and Hospital Service
Program in half, a move that would have reduced the total staff from 59
to 29. For chip, it would have meant halving the size of the
instructional staff to one part-time and five full-time teachers.

But parents, teachers, and health-care professionals waged a
campaign in the media and among board members to save what they called
an essential and inexpensive service to children. And in the most
emotional appeal, Sean Gray, an 8th grader with cystic fibrosis,
attended a school-board meeting to urge the board to let him continue
to learn.

"If we don't have the services, next year I will fail," Sean told
the board.

"You have been a brave young man," the board's president, David
Daneker, told the youngster. "You have succeeded in educating us."

The program was spared any cuts for this school year. Sean Gray died
March 7, but his only brother, Brian, 10 years old, who also suffers
from cystic fibrosis, will continue to benefit from the program.

The number of chronically ill children has grown with the dramatic
medical advances of the past few decades. According to the Vanderbilt
study, about 10 to 15 percent of all American children have a chronic
illness. Of those, about 10 percent (or 1 to 2 percent of the total
childhood population) have severe illnesses, the study estimates.

"To some degree, the kids are a product of our new capacity to
lengthen life," Ms. Shayne said. "Before, a lot of these kids had not
been appearing in schools" because they had not survived their illness.
"The social institutions' arrangements haven't caught up with the
technological advances."

States' Rules Stringent

Many states and school districts, for example, will allow students
to be eligible for home teaching only after they have been absent for a
certain number of consecutive days or weeks. In Maryland, a child has
to have been absent for four consecutive weeks before home instruction
is permitted.

Because it is not a full home-instruction program, however, the chip
program does not have to comply with that rule.

'Periods of Crisis'

The same medical advances that prolong the children's lives have
also, in some cases, eliminated the extended periods of incapacity that
once were part of chronic childhood illness.

"These children go through periods of crisis--such as chemotherapy
and kidney dialysis--when they miss school intermittently, but not four
weeks in a row," said Ms. Matthews.

"Various studies have shown that these children were falling behind
in their work and dropping out of school," because of the disruptions
caused by the short, repeated, unpredictable illnesses, the coordinator
said.

The Vanderbilt study's findings bear out the seriousness of that
problem, Ms. Shayne agreed, as well as others that affect such
children's educational success.

"Their illnesses are basically discouraging. They mean a shortened
life span and a lot of pain," Ms. Shayne said. "There are a lot of
misconceptions about their illness and a lot of things that contribute
to a social isolation. And for many, [falling behind in] school can be
the straw that broke their back."

Baltimore school officials, chip students, and their parents say the
program helps alleviate many of those problems for the children, who,
for the most part, have no unusual learning problems.

"Without it, she wouldn't have made it this far," said Sarah
Torrence, pointing with pride to her daughter Theresa's acceptance by
Baltimore Polytechnic Institute, the city school system's well-regarded
special high school for mathematics, science, and engineering.

"I do well in math," said Theresa, who is now wheelchair-bound
despite surgery last year that gave her artificial hip joints. "I want
to be a nurse because I want to help people like they've helped
me."

According to Ms. Matthews, the program has increased the number of
chronically ill students who are able to move on to the next grade
level to the point that they now progress better than their healthy
counterparts. chip students have a 2.9-percent nonpromotion rate,
compared with a 12-percent rate for the school district as a whole.

Lung Disease

Dean Storm, 10, and his brother, Damien, 8, both of whom suffer from
cystic fibrosis, an incurable lung disease, have been in the program
since they entered school.

"It's a fantastic program," said Joan Storm, the boys' mother. "When
they go back to school, they are right along with their classes."

George LeVanis, who teaches both boys in a gifted-and-talented class
at Woodhome Elementary School, said the chip program "is an integral
part of the education system."

"These two boys give so much in the regular classroom, and it would
be a shame for them not to be able to continue that," he said.

The Vanderbilt study, which also examined other services that should
be improved for the special population, said chronically ill children
should remain involved in their studies to the greatest degree
possible. "Schooling is the main occupation of young people, and the
interference of illness and its treatment with educational activities
should be diminished," the study's authors wrote in a preliminary
article.

The study also found that in many instances, teachers' attitudes and
expectations of academic achievement by chronically ill children result
in exaggerated deference to the handicap.

"So many people put labels on children with diseases," said Lorene
Massey, whose son Dillard, 13, has sickle-cell anemia. "They think they
can't achieve as normal children. But they can. Their mental capacity
is the same."

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